We are Cavernoma Alliance UK
Founded in 2005, our aim is to provide support and information for all those affected by cavernoma including friends, family, carers and professionals.
With over 2800 members in the UK and worldwide, the charity aims to raise awareness of this relatively unknown condition throughout the general public as well as the medical community.
What is a cavernoma?
A cavernoma is made up of abnormal blood vessels and can be found in the brain and/or spinal cord and looks like a raspberry.
1 person in 600, in the UK, has a brain cavernoma without symptoms (asymptomatic). This equates to roughly 90,000 people – enough to fill Wembley Stadium. A spinal cavernoma is rarer than a brain cavernoma.
In this video, hear clinicians and members talking about their experiences of cavernoma.
Our services
Telephone Support
Our telephone support line is open 10am - 4pm, Monday to Friday
Email Support
You can reach us via email at any time, and we aim to respond as quickly as possible
Events & Annual Forum
We organise multiple events around the country
CaverBuddies
On going peer support when you need it most
Professional Lectures
Presentation and research events around the country
Meet Ups
Join us, and members from your local area for a coffee & chat
Therapy
Therapy for adults, children and carers to work though concerns
Webinars
Online meetings, presentations & chats providing information & advice
Carers Support
Support, chat and advice for carers of those with cavernoma
What our members say...
A world without CAUK doesn’t bear thinking about!
Get in touch with us
Research Update – Why Cavernomas cause seizures or strokes
Researchers have discovered an explanation for why cavernoma – clusters of dilated blood vessels in the brain – can suddenly grow to cause seizures or stroke.
Our first ‘Go For It’ challenges
To launch our brand new fundraising campaign we wanted to tell you about two of our amazing CAUK supporters, Margaret and Dave, and the challenges they’re taking on for our new campaign. We hope they inspire you to join in and GO FOR IT!
GO FOR IT! for Cavernoma Alliance UK
Announcing GO FOR IT! for Cavernoma Alliance UK. This campaign is all about getting involved to raise awareness for cavernoma and having fun while you do it – no matter your age or ability.
One Swallow Doesn’t Make a Summer – Dealing with Setbacks
Was anyone else enjoying the warmer, sunny days and thinking that the frosty mornings were behind us? I even saw a swallow the other day! But true to form, the British weather has brought us back to icy winds and frost-bitten plants. How do we cope with these variations and setbacks? How do we manage thinking that we have got through a tricky period and suddenly find ourselves in a difficult place again?
Double stroke survivor – real life resilience building
Matthew Radley was diagnosed with cavernoma after falling seriously ill with a variety of distressing symptoms. He has suffered two strokes as a result of his condition but is determined to live his life with courage and resilience, and wants to inspire others to do the same.
Hopeful Acts: Planting Seeds for the Future
Looking back to this time last year, we were all at the beginning of our lockdown journeys. Suddenly, things we took for granted could no longer happen and we had to adapt to new ways of being. Our latest therapy blog post by Fiona Holiday.
Research Update – Why Cavernomas cause seizures or strokes
Researchers have discovered an explanation for why cavernoma – clusters of dilated blood vessels in the brain – can suddenly grow to cause seizures or stroke.
CARE Pilot Trial Annoucement
The Cavernomas A Randomised Effectiveness (CARE) pilot trial CAUK is the Patient Group in a consortium also including senior clinicians with a special interest in
The influence of the microbiome (the bacteria in your gut) on cavernoma development
The influence of the microbiome (the bacteria in your gut) on cavernoma development N.b. In the US, cavernoma are called cavernous angioma Introductory text for